Oh my, where to even start!
I haven’t posted a Benja medical update in a while, but if you’ve been following me on Facebook you’ll have seen some of the drama.
Backing up a little, Benja had one seizure shortly after he came home from Uganda. We took him up to Children’s hospital where he had an MRI, EEG & CT scan. Everything looks “normal” so they sent us home and said it was likely febrile (because of a fever). An entire year went by with no seizures so we decided that it was febrile and didn’t think a lot more about it.
Then, out of the blue, a few months ago he had an “episode”. I wasn’t sure exactly what it was but his arm was twitching a little bit and he was super tired. (Now I know it was likely a seizure). Then, Benja had his first, real seizure in a year. We were playing in the living room when he started acting weird and then started seizing. But it seemed like a weird seizure – he screamed and cried through the whole thing. It lasted for about 11 minutes. We decided to head up to the hospital. They checked him out and then just sent us home with diastat (to stop a long seizure) and with a referral to go back to neurology for a follow up.
Neurology scheduled us for several weeks out. We took him home and a week later he had another seizure. This one lasted 13 minutes and did not stop when we gave him the diastat. So we headed back to the ER, this one in our home town (the closest ER to us). They checked him out and gave us a referral for another neurologist so we could get a second opinion. That neurologist couldn’t get us in until after the appointment with our current neurologist but we went ahead and scheduled the second opinion anyway.
Finally it was time for the neurology appointment with his regular neurologist. We shared everything that had been happening and the neurologist scheduled another EEG (for a month away!) and told us to start him on seizure medicine. He gave us a script for Keppra.
A few days later he had two seizures in one day – they definitely seemed like they were increasing. These two were scary because the entire right side of his body seemed paralyzed after the seizure. His face was drooping, arm/leg were like a wet noodle. It took an hour or so for him to get back to normal. I debated whether to take him back to the ER (I was concerned about a stroke!) but we finally got a hold of someone in the neurologists office who said it sounded like Todd’s Paralysis – a period of paralysis following a seizure. It was scary!
Benja’s been on Keppra for 2 full weeks now and hasn’t had another seizure since. They started him on a really low dose and we’ve been slowly upping it. Today was the first time he had the full dose. We’re hoping it continues to work and he won’t have to have it increased. The Keppra seems to make him moody and uncoordinated for a few days after we up the dose but then it seems like his body gets used to it.
His second opinion neurology appointment is scheduled for next week and his EEG scheduled for the week after that. I don’t know if we’ll find out any more than we did before but we want to cover all bases and make sure our little guy is getting the best medical care possible. I’ll keep everyone updated! Thank for praying for our little guy!